I agree with Kristy.  We had a similar experience 15 years ago when our daughter was born.  ER docs are not very familiar with CAH ... still today.  We now carry the CARES info and a letter directly from the endocrinologist to ER personnel describing CAH and the need for immediate treatment.  Whenever I show this to the triage nurse, we are taken IMMEDIATELY.  We do not wait at all.  It is our admission ticket to the ER.  So I highly suugest securing a letter like this from your endo. 

I also agree with BT.  An adrenal crisis typically doesn’t just "appear" out of nowhere.  We have 2 children with SWCAH, ages 15 and 13, and there have been many times when they were at risk for adrenal crisis.  However, there was always a significant reason ... mostly illness when they were younger, like the flu, a stomach bug, fever and diareah and vomiting, mono, viral menengitis ...  Now that they are older and fortunately don’t get every bug out there, and are more independent of us and very active, our concern lies more in major injuries, like broken bones, concussion, car accidents.  Of course, they are very well maintained on their required meds and are religious about taking their meds every single time.  If that were not the case, and they were regularly missing doses and not well monitored, they could be at risk for adrenal crisis more frequently and easily.  So the key is to follow all the rules, get the meds in them.  If that is done, adrenal crisis should be an issue primarily only in the type of circumstances mentioned above. I hope that helps.  Feel free to ask any questions. ceomom82828@aol.com

Michele